Thursday, October 10, 2013

Part II {Genetic analysis: to test or not to test}

It's discussed pretty regularly in the adoption community.
To test or not to test.

Now just to make sure we're all on the same page here, I'm not talking about genetic testing for as advised by your doctor for medical reasons. I'm talking about genetic analysis for children who are growing healthy and strong. I'm talking about some collecting some spit, sending it in the mail to a lab, and a relatively inexpensive genetic testing of our children that were adopted to find out more information about them, like what ethnicity they are, the rare chance of finding distant (or not) relatives, and health information. There are several companies that are doing this including 23&me, FTDNA, DeCodeMe, and DNATribes to name just a few.

There are kinda 2 camps on the subject, (not to mention those of us that waffle around in the middle) and personally I think there are some really important things to think about from both points of view. Our children from international adoption come to us with so very little. Few material possessions if any. Little to no information about who they are where they come from. So giving them any little additional morsel of who they are seems like a good thing... right?
Well.. maybe not. It's not really so cut and dry and should requires some thought.

Camp A
As parents we can gather that information and present it to our children when we feel it will ultimately benefit them the most. This can include information about their genetic make-up and/or birth families. Maybe we explain and discuss the test results right when we get the results. Maybe children are part of the search or maybe they're too little yet to participate and understand. Maybe it becomes as much a part of our child's story as their country of birth. Maybe we use this information to find and possibly connect with biological family members and possibly start a dialog or relationship. Or we might decide keep all this information under lock and key until a child desires to know more or the time seems right. But information is just one of many tools we can use to help our children learn more about who they are, where they come from, their genetics, and the results of the testing can be used (or not) in a variety of seasons and ways to help heal the wounds that remain from the loss that comes as an inherent part of international adoption.

After all, our biological children already get to have all this information at their disposal. They can use ancestry.com and look up their family trees and know that great great grandma Sally came over from Sweden. They know who has glaucoma, who died of heart disease and who their cousins are. So shouldn't we try to give our adopted children the same information and "level the playing field" rather then leave them with empty holes that might be able to be filled?

or

Camp B
The process of gathering information should be up to the child since that information in theirs alone. Children who are adopted come from a place of loss and have so very much taken from them. They have little to no control about where they go or who they will live with. So shouldn't we leave at least some of the power to discover who they are up to them? Shouldn't we "facilitate" their search on their terms rather than satisfy our own curiosity to know who they are? The resulting information after all is theirs and not ours as parents to uncover. It is a decision that they can make all on their own, and if they ever come to us and say, "Hey Mom, I'd like to do that testing thing," only then should we guide them on their own journey to genetic testing, as initiated by the child. After all their genetics won't change over time, so there is no rush to get the test done. A child can have testing done years or even decades later without changing the results or losing information. And as children grow to teenagers and adults they have a better skills to process the information they will find, and it should be their decision alone.

And let us not forget that there is every possibility that the information revealed from genetic testing may open a can of worms. Health histories. Maybe no information at all that will help a child heal their wounds of loss. There are of course no guarantees. Genetic testing, no matter how much hope or information it provides, will never "fill the hole" for adoptees. Our children come to us from a place of loss. It can be like a hole void of information. And a place of no control. Our children lost it all when they came into our lives and into their forever families. They lost who they were, a language, a community, security, their heritage and more. And let us not forget that they likely lost it all in a split second and had no say in the matter. So even in our efforts to help them learn more about their identities, we must be sure not to take their power to learn about themselves.

As parents of a child that is internationally adopted, it is very natural to "miss" those early years before they came into our arms. As their mama, I too missed out on their first steps and giggles, and very much want to know as much about our children as I can. But does OUR parental desire to put all the puzzle pieces together outweigh their right to privacy and their right to their journey of self-discovery? Even if their journey may be totally separate and apart from us, their moms and dads?

About a year after Tess and Jude came home we did decide to have Tess genetically tested to hopefully give her a "community" to genetically identify with. In a world full of boxes, she just doesn't fit into any of them and we worried about the implications of grown up without a box to identify with. 4 years later, we realize that the results of the test really didn't provide us with any concrete answers. Duh. We certainly don't regret having the testing done, but it surely didn't satisfy any curiosity or tell us much more about who she is. She our daughter after all and we already knew that.

And off and on we wrestle with if we should use a different company and have the test performed again, or have Mimi and Jude tested. To be honest I've been way to busy with dirty laundry and dust bunnies to sit down and come to a resolution with Papa about whether or not we should do it. Yes, we're curious about our children's background. But this is our curiosity and certainly not "child initiated" at this point. And I'm coming to the realization that the longer we have our children with us, the less that it matter to me who they are and where they come from. Our children are His first and foremost, ours after that, and no test results, ethnicity, or genetic markers will change that.

Still, I very much believe that information is inherently good and a powerful tool. The jury is still very much out, and we've yet to decide whether or not to have our adopted children genetically tested.

6 comments:

I've had the testing "equipment" sitting in our office for the last 9 months. I haven't done anything with it mostly because our son just isn't cooperative right now (at 4 years old). He has no interest in allowing me to swab his cheek. We know part of our son's medical history, because of his special need. But I want to know as much as I can- knowledge is power. And I'm willing to take the chance that nothing will really come back that would be useable information. Personally, I'm not interested in the information filling a hole. I was a adopted, and even though I know who my biological father is, I don't have contact with him & have many unanswered questions. But my adoption isn't what defines me, and I hope it doesn't define my son as he grows into adulthood. On some levels, I feel like we as adoptive parents make things into a bigger deal than they need to be. Genetic testing is simply (hopefully) a little more information about who our children are, nothing more, nothing less. It almost assuredly isn't the "ultimate answer" to their backgrounds.

I personally, for me and my adopted child, don't believe in getting genetic testing. I don't see the point because all it will tell me is maybe a blood type and a bunch of dna related medical mumbo-jumbo that's not likely to be of any use. I know who she is, she's Han Chinese, my Taiwan child. I don't need to know anymore than that. I've put her through the blood tests when they thought she had a thalessimia marker, and that's not something I ever want to do again. (The test showed absolutely nothing. She has no traits, and to me the test and pain was pointless.)

When she's older and mature enough to make such a decision, I'll support her desire. I know who her birthmother is - we were lucky enough to know that - so if she wants to meet her or other family, I'll follow her lead. I know a lot of children do not have even that basic information. I think it should be left to the child when they are old enough to understand what the information means or what they might want to do with it.

It's a very personal choice. You can't make the choice for me and I can't make the choice for you. Every parent has the right to make that call. What I think for myself and my family is up to me, and you can make that same choice. I think the adoption community needs to chill-out and not judge each other for the different choices each of us make. I certainly have no desire to do testing, but it doesn't mean I like you any less because you are thinking about or planning to do it!

ALlow me to throw some more wrenches in the mix. LET's say they are predisposed to diabetes, alzheimers, or cancer; what would happen if the insurance companies got ahold of this information before an actual diagnosis.

What if they are predisposed to something that can be avoided if only they knew about it ahead of time.

I waffle. I have one bio child, one through open adoption, and one very closed adoption. So we're a pretty mixed up bunch with an awful lot of inequality. Testing might even some things out-- or it might make it worse, or create a problem where my kids don't see one. There might be some valid medical reasons to test for our kiddos. I am a big fan of knowledge and collecting all the available info. I'm also very aware that my kids are individuals who need to have as much say over their lives as they're old enough to manage. So for now, we're not doing anything. But I think about it. A lot.

4 yrs - the average time a child spends in American foster care before being adopted

1.5 million children live in public care in Central and Eastern Europe

12.4 million orphans live in Latin America and the Carribean

43.4 million orphans live in sub-Saharan Africa

87.6 million orphans live in Asia

16 million children were orphaned in 2003

Every 14 seconds a child is orphaned as a result of AIDS

400,000+ children in the American Foster Care in 2011

20,000+ young people "age out" of the U.S. foster care system each year. Of these only a little over half will earn a high school diploma.

147 million orphans in the world

SOMETHING TO THINK ABOUT...

"Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness. Kindness in your face. Kindness in your eyes. Kindness in your smile." ~Mother Teresa

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